I would be interested to hear of other people’s experience here.
Where I am, in Leicester, patients’ follow-up appointments are annual, dating from the time of their surgery and then in subsequent years, alternating between the surgical and the oncology consultants. Is this a national pattern- as I am assured it is by the medics here?
It seems from the posts on here that some people are being seen much more frequently - at least in the first year or two after treatment finishes. I have raised this with my consultant (or his deputy in my 10 minute first follow- up appointment!) but was told that I could be seen again in 6 months if I was really anxious- which made me feel a bit of a whimp. I am NOT really anxious but think the psychological effect of being left to one’s own devices for over 6 months after active treatment finishes and then having to wait another 12 months for a 2nd appointment is not good.
I had a poor prognosis and would really like to see my onc. asap after I have had a mammogram this Nov. - even if it is shown to be ‘normal’. Instead - assuming it is OK I must wait until August 2010.(which will be over 18 months since I last saw him )
Incidentially - why can’t the mammos be timetabled to coincide with the follow-up appointments- …but that’s another issue!
tpsymo I had my operation in middle of december finished rads end of March and here in Glasgow had a check up ion June evertthing appeared all right and am due for my first mammo in December a year after initial diagnosis.It seem each area has a different idea but I myuself would rather get seen regularily It eased my mind.Raise your concerns and see if you can be seen sooner.Hope you get on okay. Joycexx
Hi
I am treated at university hosp coventry & warwickshire.
Treatment (surg, chemo, rads) finished june 10th. 1st check up with onc last Thurs, next in Sept (around same time as mammogram) with surgeon (reason given that they alternate check ups with onc and surgeon to share workload) then will see onc again in Feb 2010.
Hope this gives you another perspective.
I would be feeling much the same as you, we need the reassurance at this particularly vunerable time.
take care xx
Hi Topsymo , thanks for your pm , I was away in France when it first came in…so only discovered it the other day…so sorry about the delay…but have replied .
I am being treated in Bradford , West Yorkshire and Leeds .
My treatment of 2 Ops , chemo , then rads , finished on 15th June . I saw my breast surgeon on the 27th April ( 6 months after 2nd op ) , then Onc on 17th June , then Rads doc on 22nd of July . I will see another breast surgeon on the 5th Nov , who will follow up my Chemo trial , but have no further dates at the moment.
I am still waiting to hear about a mammo and expect to hear about that in Sept/Oct as that will be the anniversary of my op .
I agree that this is a really anxious time for us all…I feel vulnerable as I had lymph node involvement…and in spite of statistics , am worried about re-occurrence .
Hugs, Jill
I live in Kent & had my 1st checkup in June - 1 year after dx and surgery. Mammos were all clear & had physical check up with surgeon.Even if you could see your onc sooner I’m not sure what you think he could do or say if the mammos are clear. I was told in June that the next check up would be “same place same time next year” - that seems to be general in this area.
During the first 2 yrs after dx I see someone every 3 months, for physical checks (onc and surgeon every 6 months, split so that I see one of them every 3 months). However the mammo and ultrasound are once a year from dx. After 2 years I think it becomes once a year.
I was told that I would be seen every 12 weeks, after radiotherapy, for 2 years as reoccurance more likely in that time of my c (don’t know what type that is yet as forgot to ask if you can believe it!)After 2 years it would be normal follow ups until year 5- didn’t ask about what normal was either. These questions are now in my little pink notebook waiting to be answered…
Katie x
I get a mammogram and a review appointment with the breast clinic every year (the review appointments are done at a very quiet Friday morning clinic as opposed to the main Tues/Thurs clinics). I was given an extra oncology appointment 3 months after the end of Herceptin treatment as the Consultants had referred me to a menopause specialist and the psychologist for counselling. At the last appointment they said they had to discharge me as there was nothing else they could do. However, they did tell me if I had any problems (i.e. any unexplained symptoms or pain) to contact my breast care nurse and she would get me an appointment with them. Apparently this stands until the end of the remission period.
I am in Scotland btw.
Hi topsymo
Do you go to Glenfield hospital? I find its a bit like being on a conveyor belt. My check ups since surgery have been annually. I am not very impressed with them at present, I expressed my concerned about a lump under my arm at my last appointment in January, they said it was a leak from my implant and nothing to worry about. Not being happy with that my GP referred me to a Plastic Surgeon who investigated and it turns out that one of the two lymph nodes he removed have cancer cells.
With my history having had bc twice already, first time 1985 you wouldn’t think they would take any chances.
Jan
Thanks for all your comments- I KNEW it was different in other parts of the country!
Yes Jan I am under Glenfield- in fact was seen there this am when I had my 10 minutes worth and a new appointment made for August 2011! I will be seen by my onc at the LRI next August.
The clinic was very busy as always - you really do feel you are just one of hundreds. The staff are pleasant enough but it is all pretty impersonal.
Hi All
I’m one of those with loads of appts due to bad prognosis, firstly the surgeon initially (about 4/5 before and after surgery) then after meeting onc and getting full path report every 3 weeks for about 6 months, this saw me thru 8 chemos and the start of herceptin. We then agreed every 6 weeks for the next 6 months, then quarterly for year 2, half yearly for year 3 and now at last annual. I also see my BS annual and have a yearly mammo + plastic surgeon which is erratic depending on stage of recon surgery.
I was diagnosed Dec 05 and my onc’s first patient to get tax chemo and herceptin not on a trial and before NICE approval so I am exceptional circumstances and therefore classed as her guinea pig. I was actually told by other patients that I was lucky as I had more appt’s than them, this quite peeved me off as I had cheered them with their clear lymph nodes etc…
I’m stll under 3 cons and pretty much straiht talking with all of them, we now just have an agreement if I have any worries then I go straight to their clinic, this works with me fine, personally I get fed up with check ups, I found my initial lump, all their tests took 10 weeks to diagnose my lump (or 5 years from my first worries)
I have met many ladies thru this horrible disease, some have died out of order of their prognosis regardless of which HA they are treated. Personally I like the less the aptt’s approach, we are all differnet.
All the best Debs XX
I haven’t seen the Consultant who did my surgery since the week after he took my lymph nodes out. He is the head of the clinic and works at 2 hospitals, so you get passed on to one of his colleagues, unless it’s something he needs to look at.
I was diagnosed may 06,aged 45,after WLE,6 x fec chemotherapy and 15x rads,my herceptin x 18 had to be withdrawn as my lvf function checks were considered too risky to have the herceptin.I still see alternate surgeon team member and oncology team member every 3 months,I had a grade 3 lobular tumor which was quite aggresive,it was caught quite early,the lump seemed to appear overnight,so my team in Lancashire certainly keep a close eye on me,for which I am really grateful.I have a mammogram yearly.It seems so different all over the country and beyond,best wishes Longyx
You would think, with the prevalence of this disease, that there would be a standard follow-up programme throughout the country.
I was discharged from my onc a few weeks after rads finished and I was told that I would see the BCN and the surgical consultant alternately, three-monthly to start with and then six-monthly. The last time I went to the clinic the doctor was VERY sharp with me and asked why I had come when I had only been seen three months ago. My answer was that I had been sent the appointment! (NB why is it that I behave like a meek and mild sheep in these situations, when I am strong, confident and assertive in all other areas of my life?)
Anyway I much prefer to see the BCN, she is very informative and experienced and says that if she has even the slightest concern about me she will get me in with the counsultant pronto. Also I can phone her if I have any worries even tho I am almost two years after dx.
My appointments were every three mths for the first two years,then three times a year until year five and then yearly for another three years.My prognosis wasn’t too good and I’m triple neg so I guess they prefere to keep an eye on me.
Hi,
I am being treated at Broomfield hospital in Chelmsford, Essex and we seem to have tons of appointments compared to some of you. I definitely prefer this and I am really sorry to hear that some of you are not seen as much as you wished. I completed 7 months chemo and 15 rads on 31 Dec 2008. I was seen by my surgeon early Feb 09, by my onc with full blood counts, markers etc in April 09, also annual mammo April 09, saw the onc and full bloods, etc again in July 09 and I have future appointments booked for the surgeon for oct 09 and the onc in Jan 2010. The surgeon’s appointments are a lengthy chat and touchy feely. The onc does full bloods, liver profile, bone profile, electrolyte profile and Ca 15-3 every time as well as the good old touchy feely.In between I can ring any time and get in a clinic.
I was dx grade 2, ER+ PR+ with no positive nodes. I think you can change doctors if you feel unhappy with your treatment, after all how many chances do we get?
Take care and good luck to all of you
Lily x
where i am it depends on your situation… my first cancer was grade 1 oand only needed surgery rads and tamox… had a review by radiologist after rads had finished approx 6 months after surgery and then saw consultant at 1 year post surgery and had mammo then demoted to specialist nurse for long term BC patients annually and mammo at that time.
more recently had grade 3 triple neg BC and required surgery and having chemo then rads. seeing onc after 3 months then radiologist 2 months after that then onc again 3 months later then consultant surgeon about a year after surgery and have mammo… after that im not 100% sure if it will still be annually as before or more often but mammo will still be annual.
lulu
I am in Shropshire and was seen every 3 months for the first year then every 6 monthsThat was the oncologist.The surgeon is once a year to coincide with mammos[see him after mammo].From next year I will be seen once a year by each of them staggered so I see someone every 6 months.So onc May 2010,surgeon Nov 2010 onc May 2011 etc.I saw onc in June this year and will see surgeon in Nov.I am triple negative and had wle,chemo and rads.I was private initially-now NHS.
I am in Sth Wales and was dx June 07. After surgery in July 07, and whilst during chemo & rads, I saw the oncologist every 4 months, the chemo trial team every 4 months and the physio in the lymphodoema clinic every 4 months. After the first year as everything was going well the appointments have been stretched to 6 monthly and after 2 years I have been discharged from the lympho clinic.
I have mammograms annually with the results immediately afterwards - no waiting for days like some of you! I do believe my appointments may go to yearly after next February but if so that can only signify good news.
I am horrified when I read others postings about treatment received (or not as the case may be!). Maybe we should be starting a major campaign to standardise treatment across the UK. My care has been excellent - others should have the same.
Jo